Surviving the Storm: My Battle With Concussion & A CSF Leak.

‘The longer I live the more I realise the impact of attitude on my life. Attitude to me is more important than failures or successes, than what people think, say or do, it is more important than appearance, giftedness or skill. The remarkable thing is that I have a choice everyday as to the attitude I will embrace and I am convinced that life is 10% of what happens to me and 90% how I react to it.’ – Charles Swindoll

It’s been a while since I wrote on this blog. In fact, only a few days after I started the blog, I had (what I considered at the time) a little accident and fell off a step ladder and hit my head, neck, & spine as well as sustaining some other minor bruises.

The end result of this little fall was two and a half months of, at times, severe symptoms which were diagnosed by various medical professionals, firstly as Concussion, then Post-Concussion Syndrome & Whiplash and finally, about 3 weeks ago, I was diagnosed in hospital by neurologists as having a spinal CSF (Cerebral Spinal Fluid) Leak. (This is a tear in the membrane that surrounds your brain and spinal cord. It results in the spinal fluid leaking out and absorbed into your body, reducing pressure and causing your brain to drop in your skull.)

I am not sure we really fully know which of my symptoms could be attributed to what diagnosis, at what point. However, in the end, the CSF leak seemed to fit many ongoing symptoms, a lumbar puncture confirmed ‘low pressure’ spinal fluid and I received treatment for this which helped a lot. (This included an epidural blood patch following over 2 weeks of lying flat in hospital whilst taking caffeine supplements & pain relief).

In short I had battled for weeks with an array of symptoms which included:Severe dizziness Lack of balance Pressure headaches Severe head and neck pain Cognitive (thinking) impairment Sensitivity to light and noise Nausea Body shaking and spasms Struggling to walk very far (and only with support) Struggling to talk at times A constant need to lie down flat to alleviate/ ease symptoms. (typical of a spinal CFS leak). Exhaustion of body & mind

Over the last 11 weeks I saw multiple NHS doctors & consultants, nurses, physios, had 3 trips to A&E, one ambulance to the house, a two and a half weeks stay in an NHS neurology ward, a CT scan, X-rays, 3 MRI scans, (all inconclusive) 1 lumbar puncture and 1 epidural blood patch.

I am currently still on the journey of recovery and building up my strength. Not fully back to normal and still have to lie down at times during the day, especially in the evenings, but I am so much better than I was.

It’s certainly been a challenging 11 weeks which totally disrupted my, and my family’s, normality. I spent 22-23 hours a day, for the first couple of months, lying in bed in a dark room, mostly on my own, doing very little and then two and a half weeks in hospital lying flat as much as possible whilst I waited for various tests and procedures.

After starting my blog in January, the third blog post I wrote was about Perspective: Stepping Back From The Detail To See The Bigger Picture. I wrote about how our perspective is really important and how we sometimes we need to step back from the details to see the bigger picture. I spoke about how sometimes it’s not circumstances that need to change but the way we see what is happening. Sometimes we have to choose to see things differently, we have to see with new eyes.

Who could have known that the words that I wrote at that time could be so significant for me in the days, weeks, and even months after I wrote them. Sometimes it’s our own words that become powerful in speaking back to us. The words we say or write in one season of our life becomes so applicable to another season of our life, in a new way.

So over the past few weeks I’ve learnt a lot about perspective. Many hours, of many days, I’ve had to step back from the detail to see the bigger picture. I have had to step back from the symptoms to get a larger perspective.

Some days you have to fight for a better perspective. Sometimes you have to push your way through the details to gain a better understanding. Sometimes you have to step back from the circumstances and choose to change your attitude.

Especially when things can be:Scary Unknown Different Exceedingly frustrating Exhausting

When the new season requires new:Patience Endurance Wisdom Strength Faith Determination

The past number of weeks again opened my eyes to new perspective. I can’t recall in my life ever being ill for more than a few days. I’ve never had a brain injury before and I really didn’t know a lot about them. I now have a much better understanding, and a better perspective of people who experience them and similar things.

The challenge of mild traumatic brain injuries, is that they are often unseen. They are not a visible injury. Concussions, whiplash, and often CSF leaks, don’t appear on normal CT or MRI scans so it creates problems in diagnosis, all you have is the symptoms to go on.

It’s a humbling process as you try and work your way through the symptoms, often having to rely on the information you seek out yourself, to work out what on earth is wrong with you and how to get the right treatment. It’s a challenge when you are diagnosed with something that people don’t know a lot about. When your illness or injury is not fully tangible, yet so debilitating, and can often only be diagnosed by the symptoms that you experience and have to try and communicate to medical professionals.

So it’s been a season of learning.

Challenge and hardship are often a place we grow, a place we learn, a place we develop. If we choose to approach them in the right way and with the right perspective.

The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.

Sometimes:We just have to be patient. We have to keep walking through the storm and trust the calm will come. We have to face the challenges of life and then use what we learn to make us stronger and help other people. We have to keep holding on to hope without knowing all the answers. We have to fight to stay thankful and see the positives within a difficult time.

It’s all about having the right perspective.

It’s not easy.

Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective and step back from the details of your circumstances.

When I stepped back from the detail in my situation, I could see that it could have been worse. Yes this accident interrupted my life, yes it was frustrating, a real challenge. It totally changed my life for a number of weeks and months. However, I had so much wonderful help and support from my family and friends. I have learnt so much and gained a better perspective and more appreciation of life. And I am now coming through my storm, I am doing well in recovery and I am getting back to some kind of normality day by day.

There is never any point in wasting energy on the ‘why me?’ or ‘what ifs?’ A negative mindset, looking backwards or forwards, just destroys you from the inside out. Even amidst very difficult times there’s always something to be thankful for and others worse off than you. I always chose to believe that my storm would pass (even when I seemed to be getting worse rather than better), others don’t have that blessing, the storm just gets worse and doesn’t go away.

Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective.

So again, with new insight, I say that so much is linked to perspective. We can choose to see the positives or become consumed by the negatives in our lives. We can choose remain thankful for the good things, even when we are going through a dark time.

Often it’s not the circumstances of our lives that need to change. It’s our perspective, it’s our attitude, it’s the way we ‘see’ and think about our life.

Sometimes we need to step back from the detail to see the bigger picture. We then realise that often the storms in life come and go. And with the right attitude and a hopeful perspective we will come through it:
a little stronger,
a little wiser,
a little more thankful for daily life,
and have a little more compassion for others.

It’s all about perspective!

I am convinced that life is 10% of what happens to me and 90% how I react to it.’ – Charles Swindoll

Lets keep asking ourselves: What parts of our own lives could we see with a more positive perspective? Self awareness is always the first step to personal change.

I have now written two update posts about my recovery journey at 6 months and at 8 months; I then have a series of posts about a relapse at 9 months when it was decided that I probably never had a concussion and all my symptoms could be attributed to a spinal CSF Leak

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

I would like to know how the neurologists in the hospital diagnosed the CSF leak. Had you been having clear fluid leaking from your nose? Did they test the fluid? Did they do CT or MRI scans? My son is having similar issues and it is proving difficult to diagnose. Thank you!

No I didn’t have any fluid leaking from the nose. That happens if the leak is from your skull. We think mine was probably in my neck/ spine so the fluid is absorbed by the body. I had a head CT and 3 MRI’s (Brain, Neck & Spine) but they couldn’t find it – which is not unusual. It was the lumbar puncture that confirmed low pressure spinal fluid and my symptoms all pointed to this . It was the need to constantly lie down to alleviate symptoms which was the key & headaches/ neck pain and severe dizziness. CFS leaks are often really difficult to diagnose. Even normal CT’s and MRI’s are often not powerful enough to show the leaks. If the blood patch hadn’t helped they probably would have had to try and more detailed scan where they inject die into the lumbar spine to try and see where it leaks out.

Hope that you get some answers soon. CFS leaks are tough to diagnose and their symptoms can vary. I used to feel the ‘low pressure headaches’ in my neck at lot. It was at the top of my neck, bottom back of the head area (& also behind my sinuses a bit). The neurologist said that people can feel ‘headaches’ in their head/ neck & shoulders. I am doing much better now but still not 100%. I still have to lie down at times during the day and the pressure builds in my head/ neck. But thankfully it’s minimal compared to how it was and I can get on with life.

Hi,
i am so blessed to have found your post. i was injured on my spine on 11/26/16 and have had repeated concussions since then. Spent many hours in bed, days at a time by myself. My neurologist says this is normal. i even went so far as having an MRI while having a concussion (terrible idea– was so sick afterward from the noise). How do i get my doctors to want to check for a CSF leak? How do I find a doctor who is interested in finding out? i have been suffering for 6 months. i have felt all along that I don’t have enough csf to cushion my brain. But they seem uninterested.

Hi sorry to hear that you are still so unwell. Unfortunately CSF leak symptoms are very similar to post-concussion symptoms, which is why we and my Drs were fooled for a while. The key thing about a spinal CSF leak is that your symptoms mainly go away when you are completely flat (either very thin pillow or no pillow).

If in the UK check out U.K. Charity CSFleak.info or if in the US try the spinal csf leak foundation website for symptom lists and other info.

Many Doctors know very little about CSF leaks so it’s best to do your own homework first. Seeing the right Dr helps. Many Doctors also don’t realise all your scans can be clear and you can still be leaking.

Hi Becky,
When I first found your site, I only saw the post that was 2 years old. Now I see that you are still living with the csf leak. I am so sorry. Your words reflect many of the same thoughts and emotions that I have had over these 6 months. I got another little re-injury last night, and it is starting over. How I eat and how I rest will determine how soon I feel better. But it will be at least 2 weeks before i feel as good as I felt yesterday.

I love how you are constantly turning outward and using your words to uplift and encourage others. Keep doing it. It benefits people like me. You have no idea. I’m sure it benefits you, too.

Our heavenly has good planned for us. That is a promise in His Word. 🙂 It is what keeps me going.

Thank you Lisa! Yes I never imagined I would still be here 2 years later. Unfortunately that is how things can go with a spinal CSF leak, especially because care and treatment provision is so limited in the U.K. for this condition.

However, through it all I have also learnt and grown so much. Writing helps me to process that whilst hopefully helping to encourage others too.

Thank you for taking the time to leave a comment. It really does mean a lot to me.

Hi Becky, I have been researching csf leaks and doctors. i don’t know if you would be able to come to the states, but there is a group of doctors here committed to helping people with it. This is the link to their organization http://spinalcsfleak.org/. Also, Dr. Ian Carroll is in California and works with people, doing multiple blood patches, explaining that many people have multiple leaks. Here is one of his youtubes https://www.youtube.com/watch?v=04jSbxYdbbY

Yes thank you Lisa for your kindness and time. Yes I know about all those Drs in the US. For now we are pursuing treatment here – but it is a slow journey in the UK with the NHS – BUT it is free thankfully! With love xx